Madhavi Gupta Is Raising Down’s Syndrome Awareness With Empathy Like A True SHEROES

Some people breakdown due to a life-crisis or tough situation, others emerge stronger. But then there are a few like Madhvi Gupta who decides to go a step ahead, hold hands with the ones who are facing a similar tough situation and making-them-stronger becomes a mission of their life.

41-year old Madhavi Gupta has a sister Nimmi, who has Down Syndrome. Madhavi recalls, "Nimmi is my inspiration. Her ability to accept situations and circumstances has taught me to be tolerant. I wish that she could have intervened more while she was growing up. Nonetheless, she is doing well considering my dad’s job took us across countries all over the world. The biggest struggle was the societal reaction to her while we were growing up. They would call her a monkey and a crazy person, and it would make me very angry. I grew up angry, not knowing why people were insensitive. It is only after I did a lot of introspection, during my volunteer time with Muskaan, that I realised- people do not know how to react to things that they do not know about. They must be made aware of different conditions. I wrote a story on her on SHEROES."  

Checkout this Article authored by Madhavi on SHEREOS - Down’s Syndrome Never Stopped Me From Exploring Life

Rather than getting bogged down by circumstances, Madhvi says she decided to rise above and hold hands with others. She co-founded "In For The Cause (an initiative of Awareness For Inclusion Foundation)" in August 2010. A non-profit organisation, IFC she claims has been set up to spread awareness of the 21 disabilities covered under the Disability Act, 2016. She asserts that it also aims at creating employment opportunities for those affected.

I decided to dig deeper and there is more to the struggle story.

"My partner and IFC co-founder, Preeti Singh, is a mother of 20-year-old Angad with learning/intellectual disability. My sister Nimmi has Down Syndrome Nimmi. She has been going to Muskaan, a Delhi based NGO empowering adults with intellectual and developmental disabilities. I have over 20 years’ experience spreading awareness and raising funds for Muskaan. We both felt the challenges faced by caregivers aren’t unique to any specific condition’; bias or prejudice is experienced by all and that became our inspiration. Preeti and I, both have been at the receiving end when it came to acceptance. Thus, it was important for us that we provide opportunities for large scale community engagement program to mitigate the lack of awareness and social engagement in this area. And thus we decided to launch IN FOR THE CAUSE," details Madhavi.

Since Madhavi has been working in this arena, directly and indirectly since a long time, I decided to enlighten all of you, about "Disability, Accessibility, Opportunity and Safe Spaces for the disabled" - a much-needed knowledge that we all lack.

Madhavi details,"Disability, accessibility, opportunity and safe spaces are interconnected. Our family members with a disability do not get readily available opportunities that many of us take for granted. Societal rejection, lack of accessible services leads to reduced opportunities and safe spaces. Our fears stem from the general lack of awareness. In the case of women with disability, the challenges become amplified. Their vulnerability makes the families uncomfortable and prevents them from exploring available opportunities. It is only when few parents take a leap of faith that others come forward. Lack of acceptance within the families ensures that persons with disabilities cannot avail of opportunities that are available. IFC is trying to address these challenges. We are trying to get our Happiness Officers to become self-advocates and share their own stories. Their voices are far more powerful than other representatives from the sector. Our endeavour, as a society, must be to empower and encourage families to explore opportunities and help their members with disabilities to become engaged members of our society."

And to do so IFC organises a wide variety of events like RUN FOR THE CAUSE; workshop based activity called ‘Canvas of Expression’ where people with disability work with employees of organizations like SHEROES, Pepsi, HT Media, Microsoft among others to create artistic expressions on a muslin cloth and a lot more.

And then she delves into how she connected to SHEROES platform and how it helped make situations better for her at IFC.

"We connected with SHEROES through a common event. We gave ourselves the task of creating a virtual community for families with disabilities. The idea was to create connections between mothers, siblings and other relatives in the community. There is so much potential in our partnership- our journey has barely started. I love the way SHEROES has given voice to women through “Moms of kids with Disabilities Community” Moms having kids with disabilities need to share their stories candidly.

This Community is thus providing women with a platform to open up, and a virtual safe space with little to no bias to help boost their confidence. The knowledge that one is not alone in this journey can be extremely empowering. This peer-to-peer learning has been proven to break the vicious cycle of constantly reinventing the wheel. In our country, we have a lack of resources available even online. Communities like these at SHEROES comes in handy because an experienced caregiver or parent will act as a guide for new parents. There is merit in sharing, and the more we share, the better our members will feel. And thus, more and more women need to be brought here to this community."

Recently, IFC and Madhavi Gupta were also a part of the SHEROES “Moms Meet-up” where mothers who are a part of “Moms of kids with Disabilities Community” were invited for a fun-event at SHEROES. And Madhavi shares her experience, "Mahima, this event was phenomenal. Before the event, our belief was that families with PWDs do not have outlets to express their thoughts and emotions on the matter. It was on the day of the event that we realised that what we thought was correct. The mothers were excited to meet others like them; the musical evening gave them a platform where they could let their hair down with no judgement coming from anywhere. They brought their children and they grooved along

with the musicians. It was an eye opener for everyone. We hope to encourage several similar or related meet-ups," asserts a very upbeat and positive Madhavi.

Thus, she goes onto to add that of all women across the world, Moms having Children with disabilities need additional support largely due to the format of families in urban regions.

"We have moved towards nuclear families with little to no support coming from the bread-earning member. It is other community members that can help fill the gap when a mother is feeling low or frustrated or even thrilled with new development. Emotions need instant gratification, and this is where our  “Moms of kids with Disabilities Community” comes in."

So what's her demand from the government as well as the society? Because I personally believe, until we command a demand, no one pays to heed! She laughs at my assertion, takes a pause and details in points:

1. My message is for mothers to share their stories as openly as possible. Societal stigma is the hardest to overcome, and knowing there are others just like them makes it easier for mothers who might be struggling.  
2.  My message to society is to be empathetic and not offer their “sympathies”. We should acknowledge the person first and not their disability. Mainstream acceptance is a boon for persons with disability.
3. The government needs to work towards comfort, accessibility and acceptability for people with disabilities because they are not being able to cash in on the largest minority. They can contribute productively provided they have access to education, which will enable them to make informed decisions leading to a cohesive societal structure.

So that was Madhavi Gupta, up-close, personal, fierce, strong and inspiring in an exclusive chat with me in our ongoing #MeetTheSheroes Series. For those, who want to know more about her, in her own words 'Madhavi a mother of two children, an amateur Kathak dancer, singer and avid reader.  

A typical day in her life too starts early with exercise, packing meals for the family and heading off to office or meetings for the day. To know more you can follow her on SHEROES.

But before that don't forget to hit the SHARE button and also leave some love for her in the comments column. If you have any queries, do share the same, she will answer each one personally. And last but not the least, all you Moms, caregivers, specialists, young girls with disabilities do join the “Moms of kids with Disabilities Community”. Let's hold hands to make the world an INCLUSIVE PLACE FOR ALL. Cheers!